Tuesday, October 8, 2013

Everyone knows Carly Fleischmann, the Toronto teen with autism who was unreachable until she typed a message on a computer at age 10. Here her dad Arthur, author of Carly's Voice: Breaking Through Autism, talks about the challenges and joys of raising her, and where she is today.

BLOOM:
Can you update us on how Carly is doing now?

Arthur
Fleischmann: She’s enrolled at the University of
Toronto, Victoria College, and she’s taking a couple of courses to start:
English literature and a technology seminar. She’s living in residence on
campus. She has two roommates in a three-bedroom suite. We ran an ad in the U
of T job bank.

One is a PhD student and the other is a mature third-year
student. They get room and board and a small monthly stipend and one has to be
home between 9 p.m. in the evening and 7 a.m. We had eight responses and Carly
met with them and picked the two that best matched with her personality. She
has daytime support from two people on two shifts. So far she’s doing great.
She’s really thriving. She’s signed up for the school newspaper and student
council and has a one-on-one relationship with the dean.

This is completely out of anything we would have expected
for her. We never would have expected her to go on to school of any sort given
her early prognosis and in in her later years, we didn’t expect she would get
here so quickly. We didn’t know she would be able to handle the stress and
changes of university.

BLOOM:
As a dad, what were the greatest challenges when Carly was younger?

Arthur
Fleischman: Initially it was just basic: managing
life. Carly didn’t sleep and she didn’t stop moving and her behavioural issues
were the main thing. We were exhausted and getting through the day was the
biggest challenge, to be honest. And then we were dealing with the emotional
fallout of not really knowing what life would hold for her and feeling there
was no sense of hope.

BLOOM:
You’re very candid in your book about the emotional and physical exhaustion.
How did you manage those sleepless nights given you had to head up a successful
ad agency the next day?

Arthur
Fleischmann: I was younger and had a lot of energy. I
was functioning on two to three hours of sleep at most and I don’t think I
could do it today. It was a blurry period for me. I did take care of myself with
nutrition and exercise and that really helps. Often people in these situations
gain weight or drink too much or do things that make it worse, whereas I kept
going to karate with my son and started at the gym.

BLOOM:
It sounds like work was a good distraction for you.

Arthur
Fleischmann: I had the night shift with Carly and the
office during the day and I’m a good compartmentalizer. So as long as I could
focus on those two things, and the other two kids were good, I was okay.

What I do for a living is so different than the
stresses of being at home. I have a great environment at my office, a lot of
positive energy, with fantastic partners and great clients. So while it’s a
stressful job, it comes with the benefits of that positive energy and a sense
of accomplishment.

Tammy was at home during the day doing the business of
running Carly’s life, doing the invoices and scheduling of therapists and
taking her to doctor’s appointments. Tammy is a real autism tiger. She jumped
all over everything as a way of controlling it. I felt better if I could do a
good job with Carly one-on-one at night, and then escape to work or workout and
support the family and have a career.

BLOOM:
How important was respite for you?

Arthur
Fleischmann: It was critical. You come to a breaking
point. You haven’t slept, you’re exhausted, your other kids need you. But it
comes at a very high price tag because you feel very guilty.

Some of the places are good, but they’re not great.
It’s not like sending your kid to the Ritz for the weekend. You can’t even kid
yourself that it’s like summer camp. They tend to be worn-out group homes or
more institutional facilities. But it’s 'good enough.' The other days of the year
we were trying to do way better than ‘good enough’ for Carly, so if a few
weekends a year she was getting good enough, that’s how it had to be.

BLOOM:
What was it like when Carly started expressing herself in writing? The media made
it look like her breakthrough was sudden.

Arthur
Fleischmann: The American media did that. In reality it
came after many, many years and after hours and hours of work. She had worked
very hard with flip cards and communication books with a speech-language
pathologist for eight years. And once Carly started writing, it was simplistic
in the beginning: two to three word phrases and it might take an hour to
produce. She felt the touch of the keyboard was uncomfortable so it was very
hard. And it still is. Word-prediction has made it a little easier.

BLOOM:
As Carly began to express yourself, did anything she wrote surprise you?

Arthur
Fleischmann: The surprises also came in layers. First
was her sense of humour. Psychologists and doctors will tell you that humour is
indicative of a sense of intelligence and of levels of empathy. You have to
understand things in non-‘black and white’ terms, which kids with autism
usually lack. So Carly could see the different layers of humanity and had the
intelligence.

And with that came her demonstration of empathy. When
her speech therapist’s mother died, Carly wrote her an e-mail saying I’m sorry
to hear your mother passed away. She was 11. And then she went on to wanting to
do fundraising efforts for those less fortunate. I would have expected her to
think of herself as most unfortunate. So to see her with that kind of perspective
in life was really gratifying and surprising. And each year was like a layer of
an onion coming off, with greater levels of intelligence and creativity
underneath. Every year there was something new.

She’s done some really big things with social justice
and social media initiatives that blow us away. And her desire to connect with
celebrities and get her voice out there is self-driven. She had to figure out
how to do it which takes remarkable savvy for anyone, much less someone who is
allegedly impaired in some way.

BLOOM:
Many of the moving parts of your book centre around your recognition that Carly
couldn’t live with your family full-time at home. I think there’s a stigma in
our culture about talking about residential care and that makes it difficult
for families. What role did it play in your lives?

Arthur
Fleischmann: At that point her behaviours were really
challenging and the lack of sleep was starting to pile up. Having her out of the
house for three nights a week brought us a sense of awkward normalcy. You could
go to bed at 11 and be assured of sleeping until 6. You could go out and see
friends. It comes with the big guilt price. It was terrible for her, but it
probably saved us. You have to look at what is the alternative. This is a
wonderful solution if it means a few days a week life isn’t perfect for your
kid but the rest of the family unit can stay intact.

BLOOM:
What would have happened had you not had the option of having Carly in
residential care for part of the week?

Arthur
Fleischmann: She would have ended up in a group home
full-time, without a doubt. And she wouldn’t be writing. She wouldn’t be
speaking. And she’d be heavily medicated. The biggest issue is the behavioural
challenges and they would have run unchecked and been exacerbated. I think
about the amount of human suffering she would have felt.

The best way to combat obsessive compulsive disorder is
cognitive behaviour therapy and that requires communication. If she was in a
home full-time and they were trying to fix things that they observed, they’d be
fixing the wrong things. They might think she has aggression issues. Whereas
we’ve learned that when Carly would slap herself there were two reasons: she
had physical discomfort, like pins and needles, or she was trying to stop
herself from doing something she knew she wasn’t supposed to do.

Even today most of our discussions are around helping
her manage her compulsive behaviours. And having the feedback from her allowed
us to better diagnose and treat it. She’s very active today in the development
of strategies. She knows what her triggers are and can avoid them. For example,
‘I’d love to go to this event, but I know it sets off this behaviour, so I
won’t.’ She’s using strategies such as breathing, or iPad schedule apps, that
lower the anxiety and make the urges dissipate. She has a scheduling app that
gives her tremendous structure, it helps her a lot, breaking her day down. She
finds that helps manage anxiety and she knows what’s coming next.

BLOOM:
What if Carly hadn’t had the breakthrough in communication that she did. Would
you have been able to focus on your non-verbal connection and come to some form
of acceptance?

Arthur
Fleischmann: I guess you would just accept it as a
given. If someone is sight impaired, you stop thinking they will ever see. But
in a way you never really get over that because you go through these milestones
with your other kids and she would still be there at home or in a group home.

BLOOM:
How independent is Carly now?

Arthur
Fleischmann: Carly has come to the acceptance that
she’ll always need support of some sort, but she thinks of these people as
assistants, instead of therapists. And she’s thinking of strategies for
herself. For example, she’s said if boys come over and are hanging out in her
room studying, she thinks the door should be left open, and she wants to make
sure her roommates check in on her. She’s allowed to drink a bit but she
doesn’t want to have more than one drink because she doesn’t feel the effects.
Dating is a possibility.

BLOOM:
What is Carly’s goal now?

Arthur
Fleischmann: She wants to be a journalist. Her
schooling may take eight years if she takes two classes per semester. Between
consulting to organizations that support autism, and research and writing and
blogging, she may actually have a career.

BLOOM:
How have you changed as a result of having Carly in your life?

Arthur
Fleischmann: I don’t know that I’m ready to be
reflective yet. Some of the things would be obvious, like patience and
thankfulness. I think I was a product of the '80s where greed was good. I think while
we all like nice things, I’m happier with small wins now. And I can definitely
look at people with a greater sense of empathy than I could before. On the flip
side, I no longer accept the status quo as the only answer. If someone says ‘We
can’t do that’ I know it’s just not true.

BLOOM:
Was it challenging for you to be candid in your book knowing that Carly would
read it

Arthur
Fleischmann: Carly was the one who wanted the story out
there. A couple of media stories were told and we could see how well they
resonated with people around the world. People said her story brought them some
insight and hope and help. We were approached to write the book. I said to
Carly, “The only way to write this book is to tell the whole truth,” and Carly
said “Write it.” Of course I ran passages by her and some things she wasn’t
comfortable with were edited out.

BLOOM:
Some adults with autism oppose the use of applied behavioural analysis (ABA) or other therapies they say are
used to 'normalize' people with autism. How do you feel about this?

Arthur
Fleischmann: I leave each to their own decisions, but
as parents you know what’s best and you do whatever you can to make your kid as
able to learn and communicate as they can. A lot of people writing these pieces
are not severely autistic. They already have a basic quality of life that is
far greater than the quality of life of a child who can’t speak and injures
herself and destroys things. There’s no way that’s a good thing. No child feels
good about scraping their skin till it bleeds or pulling out all of their hair.
As parents, you do what you can to get to basic functioning and communication.

5
comments:

This has probably been said countless times, but thank you for writing and sharing your story. It has put things into perspective on so many levels for so many people. It's really incredible to hear about Carly at university and must feel so wonderful. You are great parents to have help her find her way.

Thank you so much Arthur. It is great to hear how well Carly is doing and it is great to hear how this has affected you. I have a 5 yr old non-verbal son I'll not lie, the regimen can be brutal to deal with. It's really reassuring to know that the exhaustion, frustration and all the other negative feelings are part of being human and a father and not part of self pity and being maudlin. I really appreciate it so thank you Big Man. Love to Carly and the rest of the family, John (N Ireland).

Would it be possible for us to know how Carly was able to qualify for postsecondary? Was she earning credits in high school and enough of them to graduate with a high school diploma including the required Grade 12 U level credits? How easy did she find the university process to acquire an accommodation letter for her courses? Answers might help many of us who are trying to convince school principals and other people in the schools that our children can and should be allowed to earn high school credits and attend university or college.

Hello Anonymous -- I asked Arthur about your query regarding qualifying for postsecondary, and this was his response:

Carly applied to U of T as a home schooled student. She didn’t have to take exams but did have to complete a minimum number of 4U level courses. She did this through City Academy in order to have sufficient credits in time for the fall.

Thank you for asking Arthur. I thought Carly was attending a high school in North Toronto to earn credits. I didn't know that students with disabilities could apply as a homeschooled student having taken Grade 12U level courses from a place like City Academy. I would think that Carly's proactiveness as an activist helped as well since more postsecondary institutions are looking more at student profiles rather than just grades or schools. Good luck Carly. Have a good time at university.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.